Scary Situations Out There

I had a lady come tour last week.  She was referred to us by the sitter service she is currently using.  Her family pays for a sitter 4 hours a day.  She is in the mid stages of Alzheimer's probably about the same place as my mother, maybe a little further along.  We toured one of our rooms, went next door to talk to the resident in that room and when we walked by the empty room we had just toured less than 10 minutes before, it was new to her.

The director of the sitter service says the lady cries when the sitters leave every day because she is scared.  Her family lives out of town, like so many these days.  I'm sure 4 hours a day at $15 an hour is what the family can afford.  Yet I shudder to think of this lady home alone for 20 hours a day.  Like so many situations, the family doesn't want to upset her by talking about assisted living.  Unfortunately, the symptoms of dementia are such that there comes a time when the individual can no longer be the one to make those decisions.

I have one resident who stayed at home until she burned her house down and then had no where else to go.  Luckily, she was not killed in the fire.  A year or so ago, there was another fire in a town close by and the owner was not so lucky.  The news talked about how she was known to have Alzheimer's disease.  And these are just the situations I am aware of.  Our nurse at assisted living also works in the emergency room of the local hospital.  She sees a lot and tells me I just can't imagine what is out there in the community.

I know it's not easy to make an unpopular decision.  But is it preferable to leave someone home alone who is not really able to care for themselves and who is scared on top of it?  I can only imagine the situation is going to get worse.  Skilled nursing paid for by Medicaid is going to get more difficult to qualify for as their budget gets overwhelmed by the age tsunami.  People of this generation have mostly not purchased long term care insurance.  Too many have relied on social security only for their retirement. People of my generation have to keep working until we die because we can't afford to quit working.  I don't know the answer, but it is scary.

Hard Won Insight

My week ended with a meeting requested by one of our assisted living family members.  When she called to set it up, I already had set my mind to dread it.  This is a family member I just can not seem to please.  Whenever she says anything to me, it is a complaint. Even when there might be the hint of a compliment, there is a "but" that goes with it to negate the compliment. We just can't seem to do things right for her.  Her personality is such that it comes across very forcefully and harsh.  I guess I am spoiled because what we usually hear from families is how great we are, how much they appreciate what we are doing. And of course that is what we all want to hear.

The night before, I was praying for strength and wisdom.  My response was such a clear message that this daughter very much wants to be in control and I needed to listen and respect that, I can't help but believe it was an answer to prayer.  I was reminded of the phrase Joyce Meyer uses so often, hurting people hurt others.  So while I still felt on the defensive and I know my body language was defensive, I at least went into the meeting with a better mindset than I would have otherwise.

During the meeting, this daughter pointed out all the ways her expectations had not been met.  And I could not disagree with any of them.  There was nothing that would endanger her father, but they were all valid complaints.  But the most striking theme for me that came through was her desire to be involved.  Many times we see families who are overwhelmed by the situation, taking care of mom or dad while working and taking care of their own families.  They are relieved when we, "the professionals" come in and handle things with mom or dad and relieve some of their pressure.  Yes this daughter has control issues, which I can see in myself as well.  But if I stop and put myself in her shoes and how I would feel if we were talking about my mother, I was much better able to see her point.  This is one family member that does not want the "professionals" to handle things and wants to be in control.

Although it certainly doesn't feel as good to have areas of growth pointed out to you as it does to get the praise of families, I left the message thankful for the opportunity to grow and to improve my team.  Yes, I wanted to sit in a dark room and cry somewhere for not having everything perfect, because I am a perfectionist.  But if I move past my own feelings and acknowledge her points, it will only help me improve care for residents and families.  I have never realized how much caring for families is just as important a part of my job as I have recently.

When I look at my life I am so amazed at how God really does have a perfect plan.  The crazy patchwork of jobs I have held over the past 25 years has perfectly prepared me to care for residents, supervise staff in a supportive manner, counsel families and community members and prepare me for my own family's needs.  And at the same time, my mother's illness is equipping me with the experience to be better at my job.  I have to keep reminding myself that spiritual, emotional and vocational growth is like exercise, when you exercise to improve your muscles, there is discomfort.  But that discomfort is a reminder that you are improving.  And so in the end, I am thankful for the hard meeting.

Conversations about Nothing

I find myself thinking about the old TV show "Seinfeld".  They called it a show about nothing.  Over the years, I have learned how to do a great job having conversations about nothing.  I had a call from Mom while I was at work again this week.  I try to respond to those as soon as I can because I know it means something has happened that has triggered her to call me.  Then it takes some investigative interviewing to figure out what it is.

I'm so thankful for the experiences God has provided over the years that allow me to slip into the therapeutic mode with Mom in these situations.  I was running errands for work, so I did what I swear I would never do and talked on my cell phone while cashing the petty cash check, buying stamps, etc.  From what I could figure out, Mom is bored.  I understand very well the personality difference between she and my Dad because it is very much like the difference between me and my husband.  I am happy as a clam to cocoon in the house with my knitting or other hobbies.  My husband likes to be around other people.  So too, my dad loves his workshop and can spend many happy hours working on a project.  My mother has always been a social butterfly and needs to be around people.  So the phone call this week was because she gets bored around the house while dad is in his workshop.  I could also see with her, what I have seen in residents at the assisted living.  They are bored and want to be busy, but the skills to self initiate a project and keep it going are gone.  I have bought my mother abstract coloring books, a journal, a book to prompt her to write about her life and the materials to paint.  But she is just not able to organize and take that first step.  And probably even if she took the first step, could not maintain concentration to keep at it.

On the one hand, my problem solving brain kicked into gear, what could be done (by me long distance) to help with her need to do something and be with people?  Secondly, but probably most important was to meet the emotional need at that time.  At one point in the conversation it went through my head, even if they were here with me, I would be gone during the day and this would still be an issue.  So I contacted the local Senior Center.  I sent the information to my dad and we will see where it goes from there.

It was interesting kind of looking in from the outside at myself, kicking into the professional mode with my own family, playing detective trying to figure out what was going on, what where the needs she was trying to fill, navigating through the same threads of conversation every 5 minutes yet finding the questions to decipher the issue at hand.  I've had lots of conversations about nothing with residents over the years.  Having worked as a counselor getting to the emotional content of conversations and not so much the actual content, I guess it is a skill I'm pretty comfortable using.  It seems pretty normal to me to go around and around and validate feelings while trying to mine for what the person is trying to express.  So when I talked with my scientist brother, it was very interesting.  He is a chemistry professor, the height of logical thought.  So the same day when Mom called him and began circling round and round, he was not as prepared with how to respond.  Yet what makes us such a good team is that with his logic, he was able to have a conversation with dad about how mom being  pretty confused all the time effects him. 

I don't care what anyone else says, if you think God does not have a plan, you are not paying attention.  Thirty years of a crazy patchwork of jobs in long term care and mental health is the best preparation for what I'm dealing with now and I hope helping other families as well.

I don't want to be the oldest generation

As the new year begins, I find myself not with feelings of anticipation, but of dread.  My dad has always been the person I most look up to.  I've asked him advice on home improvement, managing people, parenting.  I'd like to ask him relationship advice right now.  I've mentioned before the one fight I heard my parents have when I was about in 6th grade.  My Mom was always the social butterfly, needing to be with lots of other people, liking to be the center of attention.  My dad, on the other hand, was quiet and a true introvert.  He finds himself when he is working in his shop.  Even though I'm over 50 years old, I'd like to call and talk with him about how you make such a situation work, for my own life.  They obviously did.

But I can't bring myself to burden him with one more thing.  Already I miss being able to go to him.  The Christmas gift deal was a real eye opener that he is just making it with what he already has on his plate.  I remember when my maternal grandfather died.  I thought to myself at the time, how hard that must be for my mom to now be the oldest generation.  The source of wisdom and strength, who other people must rely on.  I don't want to be the oldest generation.  I want my dad to be there.  I've known for awhile that mom was not in that position any more because of the dementia.  I need to be a source of strength now for my dad, not the other way around.

One of my earliest memories was when I had a bad dream one night.  It was less than 5 years old because I remember the bedroom I had at the time.  My dad came to see what was the matter.  I told him I had a dream that he had died.  He reassured me that it would be a long time before that would happen.  I still hope that is a long time in coming.  But already I miss my dad.  I'm not equipped to be the oldest generation.  I don't want to be the oldest generation yet.

Great Information

I was lacking 3 continuing education hours for my assisted living administrators license renewal.  So Friday afternoon, I came home early and got on the computer to do an online class through Easy CEU.com.  What a great resource!  There were 3 different classes by Jolene Brackey.  I've mentioned her before as the author of the book "Creating Moments of Joy".  I have never been able to hear her speak in person, so the online video module was very inspiring.  I chose to do the class called "Creating a Safe Haven".  It was a class designed for people that are thinking about building or creating a Memory care facility.  But so many of the tips she mentioned have application for those caring for someone at home as well.  Little things like dark colors are seen as holes, especially in flooring.  If you have walls painted a light color in the bathroom, the fixtures blend in.  Way too many ideas for me to relate here, but it is a reminder about the many resources that are available now.

As a facility person, her insights do seem to point out that there are many things you can do in a facility that you can't do at home.  Certainly there is the social aspect of a facility.  She says that folks with dementia do better in a setting with others with dementia.  I can see that as the disease progresses.  But in my experience, early in the disease, they function well with other seniors that have more physical, medical issues.  I heartily agree that a small setting is best for those with dementia.  The large, hotel type setting of many assisted living and independent living communities would be overwhelming.  Creating a space to walk (some label it as wandering), both outside and indoors certainly is easier to create in a facility setting.  Having lots of pockets, cabinets, drawers of "stuff" to keep people engaged would seem to be more easily done in a facility that at home.  The idea of camouflaging areas you don't want them to use would seem to be easier to do in a facility as well.

She references a couple other resources as well.  Elizabeth Brawley has written a book (quite expensive) about designing for dementia.  I'm pretty sure my boss bought that when they were looking into creating a memory care building.  She also suggests reading the book "My Journey into Alzheimer's Disease" by Robert Davis.  If I wasn't trying to put myself on a book diet, I would have that in my cart at Amazon.com already.
It is refreshing to hear someone with such insight and a love for people with dementia give ideas.  It is inspiring for me as well to try to share some of those ideas with the support group.  We all need some refreshment at times.  How thankful I am for a boss that supports my learning.  I just hope it will help me to help others in their own journey.

A Measure of the Progression

I had a dramatic example this week of just how different things are now with my mother's memory loss.  She was not Martha Stewart when we were young, but close when it came to Christmas.  All through the year she would shop to find just the right present for everyone.  It might not cost a lot of money, but it was perfect for that person.  She taught us that it really is the thought that counts. Giving money was forbidden.  That showed a lack of personal involvement and care for the person.   Presents were wrapped with coordinating paper and bows and every year there was an ornament on one package that went with the theme and was collectable.  One of my favorite traditions from when I was a child was the purchase or creation of one ornament every year for each one of the kids that symbolized something for that year.  One year, it was a piano.  The year my oldest turned 16, he got a matchbox car ornament.  Then when each of the 3 of us, and now my own children, leave home, we took our special ornaments with us to start our own homes.

So I was quite surprised with the package I received in the mail this week.  I knew they were working on our Christmas package because Mom told me so in our weekly phone call last Sunday.  I'm pretty sure our package to them arrived a day or two before which is what spurred them on.  Forgetting special events was one of the signs when I knew something was wrong with Mom (she forgot the birthday of one of her 2 grandchildren, yet remembered my husband's birthday 2 days before).  This year, I called on my youngest brother's birthday to give a gentle reminder.  I think Dad just has too much on his plate and he had forgotten.  So I wasn't surprised about the kind of last minute aspect of the gifts (which was also unusual).  Then I opened the package.  My parents have always been bad about using boxes that are really not big enough and just covering them in so much tape, they make it through.  But when I opened the outer box, I found a box of Hickory Farm candy that came ready wrapped with a bow.  Then there was the box with a electric coffee mug for your car.  It was not wrapped and had a gift tag slapped on it.  Now lest you think I am disappointed by the gift, I honestly could care less about getting any kind of present.  It was just an example of how different things are now.

When I got dressed for work yesterday morning I put on a top that I realized was the last personalized gift I will ever get from my mother.  I can't remember if it was last year or the year before.  Then last night I talked to my middle brother.  Guess what he got for Christmas?  He got a box of Hickory Farms and a car plug in coffee mug.  Again, I don't care about the present itself.  But it says to me that Dad really has too much to do.  And I don't think he realizes it's not going to be short term and its not going to get better.  No wonder people get depressed at the holidays.

Sexuality and Dementia

I have been dealing with a new and difficult situation at work.  I have a male resident with early dementia who continues to suffer with grief and the loss of his wife 5 or 6 years ago.  In my non-clinical estimation, he is looking to fill the hole of his grief with another relationship with a woman.  His history from before he moved in with us seems to confirm my theory.  He has focused on one of my female residents who also has early to moderate dementia.  So even if she were interested in returning the emotion, the competency to make such a decision is questionable at best.

The male resident continues to pursue the female resident and just will not leave her alone even after multiple discussions with he and his family.  I had no choice but to give him notice that he must move out.  This situation has been such a challenge in many ways.  No child wants to think about their parents and their sexual needs or even admit they exist.  But when you look at Maslow's hierarchy of needs, those needs for love are very basic.  Not to mention as adults with long time life experience, expressing these needs are something that resides in the long term memory part of the brain.  The reasoning and decision making part of the brain is compromised early in the diagnosis.  It doesn't help that there are so many stereotypes to counter in this kind of situation.

I truly believe and have talked with the man's family that this behavior does not make him a dirty old man.  I really believe his decision making abilities are so compromised and his emotional need for love so great that he really can't help himself.  Again the difficulty comes with a dementia diagnosis because you look at the individual and they don't appear to have any physical symptoms.  It is the behavioral symptoms that let you know there is a problem and it's hard to separate the behavior from the person.  His family is embarrassed and upset by his behavior.  In part, I'm sure my giving notice seems like a punishment for his behavior, but there really is no other way to ensure my female resident's safety.  I also think if it weren't this female, it would be another because his need is so strong.

The family of the female resident doesn't get off easy either.  They also see the behavior and wonder if their mother had been in some way leading the gentleman on or if in her younger days she was a "loose woman".  No matter what the specific situations, it is so difficult for families as the person they once knew becomes farther and farther away and they are left with someone they don't recognize any more.

Education of staff who are minimally trained is another hurdle.  I am fortunate that most of my staff have been with me for several years and are pretty well experienced with the symptoms of dementia and what happens to people as they decline when it comes to memory and bodily functions.  The aspect of sexuality seems to set everyone back a step or two as cultural expectations and stereotypes come to the forefront in situations we don't experience very often and a situation where as humans we feel the need to protect the person we see as more vulnerable.

As with every situation I experience at work, I now look at it from how I would see things as a family member.  I know my mother enjoys attention.  I still remember one particularly traumatic situation when I was a child and my parents had a fight about my mother flirting with other men at a party.  Knowing how basic the need for love is and knowing my mother, I have no doubt if she were in a similar situation, she would enjoy the attention.  Does putting myself in the place of my family's make me better at my job or does it make me less objective and compromise my ability to do my job?  I know God has placed me in this position to care for his children.  I just pray He will give me the insight to do what is right by my residents and their families.